Thursday, April 17th

A short a simple update for today; no PT/OT, music therapy, etc. The focus was on Dallas getting PLEX, Plasma Exchange, and what it entailed – risks, precautions, etc.

We felt good after talking with the “PLEX” folks, as far as the “if this, then that’s” as to how some of these issues would be fixed, should they occur during.

We spent the rest of the day waiting to hear from the surgery team to stop by, specially how the central line would be placed, what the procedure looked like, if she’d be sedated or intubated, etc., especially since recent studies have a few things to say about Acute Necrotizing Encephalopathy and anesthesia.

Papa is on the night shift and called us just moments after we left, when someone from “surgery” stopped by to get a consent. This was the same person that stopped by earlier to get the surgery consent, but indicated she wasn’t the person to ask the questions to – someone else would stop by for those. Fast forward to the end of the day and suddenly she’s “the one” to answer questions – not a good way to instill any confidence in the process. It caused a lot of extra frustration/stress in an already otherwise challenging time.

We decided to back up and punt and will be there bright and early to speak with the team in person to get the logistics and answers we need. It’s not that we don’t want Dallas to have PLEX – we absolutely do – it’s just that we want to make sure we’re doing our due diligence to understand the risks and what’s involved.

Today’s little win… we got Dallas in her chair and out of her room for a some laps around the unit. If for nothing else, at least it’s a change of scenery to help break up The monotony of lying in a hospital bed all day.

“Tomorrow is another day, a fresh dawn to rise with strength and heal with hope.” — Adapted from Scarlett O’Hara’s sentiment in Gone with the Wind. 

« Wednesday, April 16th

Friday, April 18th – Central Line, Surgery, and a Bit of Relief »